Autism Spectrum Disorders/Asperger's Syndrome

By Samantha Zaid, Psy.D., William James College

Autism Spectrum Disorder (ASD) is a developmental disability of the brain characterized by difficulties in verbal and nonverbal communication, social interaction, and repetitive and/or restrictive patterns of behavior or interests. To receive a diagnosis of autism spectrum disorder, symptoms must be present beginning in early childhood and impact the individual's ability to function. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), ASD is characterized by impairments in three categories: 1) verbal and nonverbal language and communication, 2) social interaction impairment, and 3) atypical and ritualistic patterns of behavior and interests.

Individuals with ASD may show delays in spoken language, and in some instances, intellectual disabilities are present. A person with autism may have difficulty with shared attention or sharing emotions and/or interests with others. Individuals may also display repetitive or unusual uses of verbal language such as echolalia, the meaningless repetition of words the person hears. Additionally, it can be more difficult for people with ASD to understand nonverbal behaviors, such as facial expressions, body language, gestures, and tone of voice.

Resource Organizations » Autism Spectrum Disorders » Nantucket

In Massachusetts

Advocates for Autism of Masschusetts

Advocates for Autism of Massachusetts strives to assure the human and civil rights of individuals of all ages across the entire Autism Spectrum and promote the availability of essential supports so that they may live fully and enjoy the same opportunities as other citizens of the Commonwealth. Advocates for Autism of Massachusetts provides education to individuals with ASD, their families and other AFAM members/supporters to be effective, vigorous agents of change. In addition, this organization provides legislative advocacy on behalf of individuals and families of individuals with Autism Spectrum Disorders, and their website provides up to date information on legislative changes impacting these individuals and their families. They also provide a newsletter and host events to raise awareness about the need for services for individuals with Autism Spectrum Disorders, including advocacy for the growing and anticipated number of adults who will need support.

Asperger/Autism Network (AANE)

The Asperger/Autism Network (AANE)'s mission is to foster awareness, respect, acceptance, and support for individuals with Asperger Syndrome and related conditions and their families. Their Information Line (617-393-3824) provides parents, adults with AS, teachers and professionals with information, support, resources and referrals. Additionally, they have three Family Grant Programs, funded by the generosity of the Edwin Philips Foundation, the Doug Flutie Jr. Foundation for Autism, and an esteemed private donor. Support and social groups are also offered at their Watertown location, as well as throughout Massachusetts and other Northeastern states. They also have articles related to college life for those who plan on attending or applying for college.

Autism Alliance of Metrowest

The mission of the Autism Alliance of MetroWest, Inc. is to provide families in the MetroWest area of Boston with information, education and support. The organization plans and implements programs and events to aid families while increasing public awareness regarding autism. They currently service 1,300 families and specialists in the field of Autism.

Autism Connections provides support, information, and practical help for individuals with Autism Spectrum Disorders and their families living in Western Massachusetts. Community Resources was founded in 1989, and continues to be directed by, parents of children with autism. Their goal is to help families, schools, professionals, agencies and communities understand autism, promote the well-being of individuals with autism, and foster their inclusion in the community. They offer support groups, a referral directory, and educational advocacy, as well as a multitude of information and resources.

Autism Resource Center of Central Massachusetts

The Autism Resource Center was conceived in 1996 by a group of parents to serve primarily as an information and referral service for children and families affected by disorders within the Autism Spectrum. The Center services the eastern portion of DDS Central-West Region. This encompasses North Central, Worcester, and South Valley areas. This program is funded by the Department of Developmental Services (DDS) and administered by Horace Mann Educational Associates, Inc. The Autism Resource Center is designed to help parents, educators, service providers, and medical professionals provide effectively for those diagnosed within the Autism Spectrum.

Autism Society of America

The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum and their families, to be fully participating, included members of their community. Education, advocacy at state and federal levels, active public awareness and the promotion of research form the cornerstones of ASA's efforts to carry forth its mission. The Massachusetts Chapter of ASA can provides information about Autism as well as information regarding available services for Autism across the state of Massachusetts.

Autism Support Center- Northeast ARC

The Autism Support Center (ASC) was created in 1991 to support parents and professionals who expressed a need for assistance finding information and support about autism, pervasive developmental disorder (PDD) and Asperger's Syndrome. The Autism Support Center empowers families who have a member with autism or related disorder by providing current, accurate, and unbiased information about autism, services, referrals, resources, and research trends. Support groups are also offered throughout the geographic area for parents and siblings.

Community Autism Resources

Community Autism Resources is a family created and oriented community services organization. The valuable input received from families and professionals sustains their continued focus on assisting and educating families and professionals so that they can better meet the needs of persons with Autism Spectrum Disorders (ASD). They promote building collaborative relationships with those involved in an effort to provide comprehensive and individually tailored supports. The organization also offers a variety of services and events for families, professionals and community members at no cost. Their area of coverage includes most of Southeastern Massachussetts, the Cape, South Shore, and the Islands.

The Disabilities Resource Network (DRN) is an information and referral service for people with disabilities throughout Greater Boston. The goal of the DRN is to help people with disabilities find programs and services within the community that are accessible and offer opportunities for the fullest level of participation possible. An experienced professional works with callers to find services and programs related to religious life, education, social/recreational, housing, legal/advocacy, vocational, or any aspect of life in the community. This service is non-sectarian and free of charge.

Exceptional Lives Resource Directory

This is a user-friendly Disability Resource Directory, a searchable online database of disability programs and providers in Massachusetts. It’s designed for parents and caregivers of children or adults with developmental disabilities – and professional care providers that serve them. It contains more than 1,200 resources in 54 service categories in areas such as therapy (including speech, PT, OT, and ABA providers), education, employment (including transition & vocational programs), medical & clinical, adult programs (including housing & transportation services), parent & caregiver support, legal help, social & recreational (including after-school programs & summer camps), sibling support, family grants, and more.You can do quick and easy searches by zip code, age, disability, and service type. You can see if a service is covered by MassHealth, or if a facility is wheelchair-accessible. Our initial disability types include ADD/ADHD, Autism spectrum disorder, bipolar disorder, cerebral palsy, Down syndrome, and intellectual disability. With each search you get a printable resource list and a visual resource map displaying options in your local area – or across the state.

Family Autism Center, South Norfolk County ARC

The Family Autism Center was created in 1996 by SNCARC. We have a Steering Committee made up of family members of children and adults with Autism Spectrum Disorders (ASD). Their mission is to provide advocacy, supports and services to people with ASD and to their families.

Family TIES of Massachusetts

Family TIES of Massachusetts is a program for families of children with special needs and chronic illness, and the professionals who support them. Family TIES offers parent-to-parent support, information and referral services, and workshops to ensure that parents feel confident in caring for their children's special needs. The website offers information about services and supports, as well as personal experiences from early intervention through transition to adulthood. In addition, Family TIES offers regional coordinators who help parents of children with special needs get connected to support groups in their area.

First Signs, Inc.

First Signs is dedicated to the early identification of and intervention for children with autism and other related disorders. The organization aims to educate parents, healthcare providers, early childhood educators, and other professionals in order to ensure the best developmental outcome for every child. They focus on improving screening and referral practices to lower the age at which young children are identified with autism and other related disorders.

Greater Massachusetts Special-Needs Events

SPED child and teen massachusetts works to gather resources for parents with children on the autism spectrum and diagnosed with ADHD. Resources include support groups, listservs, disability organizations, upcoming local events and opportunities for parents and their children. They hold informative workshops with professionals, parents, and other agencies in the state.

Massachusetts Act Early

The Massachusetts Act Early Coalition works to strengthen state and community systems for the early identification and intervention for children with signs of developmental disabilities, such as autism spectrum disorders. The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth. Massachusetts Act Early aims to educate parents and professionals about healthy childhood development, early warning signs of developmental disorders including autism spectrum disorder, the importance of routine developmental screening, and timely early intervention whenever there is a concern.

Massachusetts Advocates for Children: Autism Special Education Legal Support Center

Since its inception in 2002, the Autism Special Education Legal Support Center of the Massachusetts Advocates for Children has become a vital force within the autism community, providing training, legal assistance, advocacy, and services to thousands of parents and professionals to ensure that children with autism overcome lowered expectations and receive equal educational opportunities. The Center also provides intensive training and legal advocacy for parents who face cultural and language barriers in selected Haitian and Latino communities.

Massachusetts Department of Mental Health

The Department of Mental Health, as the State Mental Health Authority, assures and provides access to services and supports to meet the mental health needs of individuals of all ages, enabling them to live, work and participate in their communities. This critical mission is accomplished by working in partnership with other state agencies, individuals, families, providers and communities.

New England Index: Information on Disabilities Exchange

Information clearinghouse for people with disabilities. Includes database of disability programs and services in MA; fact sheet library on disabilities; recent local and national news about disabilities; and info on multicultural competency. Interested parties can also submit a request online or call the phone numbers above for specific resources in their area.

INDEX helps people with disabilities find the information they need. They collect and keep up-to-date information on programs, providers and services in Massachusetts that have something to offer to people with disabilities. INDEX is a project of the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School.

School Psychiatry Program and MADI Resource Center

Schoolpsychiatry.org is a joint project of the School Psychiatry Program and the Mood & Anxiety Disorders Institute (MADI) Resource Center, both of the Department of Psychiatry at Massachusetts General Hospital (MGH). Schoolpsychiatry.org is committed to enhancing the education and mental health of every student in every school. The Mood & Anxiety Disorders Institute (MADI) Resource Center translates the latest research advances into practical information, helping people work with their clinicians toward the most accurate diagnosis and best possible treatment results. The Center also offers resources and support to help people manage daily living with mood and anxiety disorders and cope with the disorders' effects on family relationships.

The mission of the Disabled Persons Protection Commission (DPPC) is to protect adults with disabilities from the abusive acts or omissions of their caregivers through investigation, oversight, public awareness and prevention.The DPPC is an independent state agency and the jurisdiction of DPPC includes adults with disabilities between the ages of 18 and 59, who are within the Commonwealth whether in state care or in a private setting and who suffer serious physical and/or emotional injury through the act and/or omission of their caregivers. The DPPC fills the gap between the Department of Children and Families (DCF) (through the age of 17) and the Executive Office of Elder Affairs (EOEA) (age 60 and over).

The Lurie Center (formerly LADDERS)

The Lurie Center (formerly LADDERS) is a highly successful program designed to evaluate and treat children and adults having a wide variety of developmental and handicapping conditions. Our mission is to provide the highest quality clinical, social and support services to those diagnosed with autism, pervasive developmental disorders and other developmental disabilities.
LADDERS, a program of Mass. General Hospital, is unique because of the population it serves and because it uses a multidisciplinary approach which begins with comprehensive medical evaluations and extends to supporting the well-being of patients and families. Nurses, social workers, speech pathologists, occupational therapists, physical therapists, neuro-psychologists, special education professionals and family members are involved in the treatment processes in addition to the physicians. Each has a depth of expertise in their respective field.

Understanding Our Differences

Understanding Our Differences, Inc. is a nonprofit organization working to increase information, understanding and acceptance of people with disabilities and individual differences in schools. Since 1978, Understanding Our Differences has touched the lives of thousands of children and adults in Newton, Massachusetts through the delivery of a unique and creative disability awareness curriculum in collaboration with the Newton Public Schools. This award-winning program has been disseminated to more than 200 schools and organizations nationwide.

Outside Massachusetts

Autism Speaks

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. It is our firm belief that, working together, we will find the missing pieces of the puzzle. Autism Speaks. It's time to listen.

CDC: National Center on Birth Defects and Developmental Disabilities

The mission of the CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) is to promote the health of babies, children and adults and enhance the potential for full, productive living. To achieve its mission, the Center works to identify the causes of birth defects and developmental disabilities; help children to develop and reach their full potential; and promote health and well-being among people of all ages with disabilities, including blood disorders. The NCBDDD site features an informational "A-Z index" of birth defects, blood disorders, and disabilities. The infant health and child development section discusses pediatric mental health topics such ADHD, Autism Spectrum Disorder, Intellectual Disability, and Down Syndrome.

Disability and Abuse Project

The focus of this organization is to help prevent the physical, sexual, and emotional abuse of people with developmental or intellectual disabilities. Their mission is to disseminate information on how to reduce the risk of abuse, to promote healing for victims, and to seek justice for those who have been victimized. The Disability and Abuse Project is a function of Spectrum Institute, a nonprofit educational corporation. The Project works with nonprofit organizations, media, government agencies, and individual advocates. The website contains information on books and resources relevant to issues involving disability and abuse.

Do To Learn

Do To Learn is an online collection of hands-on resources for children with autism, Asperger's Syndrome, and learning disabilities. Most of the materials on the website are free; they include games, puzzles, songs, and charts that help children learn social skills, emotion recognition, verbal communication, and other important skills. There are also extensive resources for teachers, such as classroom activities and organizational plans. In addition, the website offers information to parents on autism spectrum disorders and learning disabilities.

Mental Health America

Mental Health America (formerly known as the National Mental Health Association) is the country's leading nonprofit dedicated to helping ALL people live mentally healthier lives. With more than 320 affiliates nationwide, they represent a growing movement of Americans who promote mental wellness for the health and well-being of the nation -- everyday and in times of crisis.

Organization for Autism Research

Organization for Autism Research is the only autism organization which focuses solely on applied research. Putting research to work providing answers to questions for those confronted directly and indirectly by autism and funding research studies that investigate treatments, educational approaches, and statistical aspects of autism.

Sibling Support Project

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The Sibling Support Project believes that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, they want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues. The mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong, and ever-changing concerns through workshops, websites, and written materials. Visit the website for local listings of "Sibshops", i.e. sibling support programs.

The Brain and Behavior Research Foundation

The Brain and Behavior Research Foundation (formerly NARSAD, the National Alliance for Research on Schizophrenia and Depression) is committed to alleviating the suffering of mental illness by awarding grants that will lead to advances and breakthroughs in scientific research. The BBR Foundation offers news on the research it funds as well as information (documents and videos) about these and other disorders in children and adults. It also provides guidance and resources for families coping with a child or parent with mental illness.

Autism Spectrum Disorders (ASD). General information from the Center For Disease Control (CDC) about autism spectrum disorders, including what ASD looks like in children and adults across different contexts. Also provides information regarding a large array of treatment approaches and interventions. There are links to videos, articles and new data and research.

Disclaimer: Material on the William James INTERFACE Referral Service website is intended as general information. It is not a recommendation for treatment, nor should it be considered medical or mental health advice. The William James INTERFACE Referral Service urges families to discuss all information and questions related to medical or mental health care with a health care professional.